Cutaneous Vasculitis (legs): Hey! I was... - Vasculitis UK

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Cutaneous Vasculitis (legs)

Carina03 profile image
18 Replies

Hey! I was diagnosed with vasculitis leukocytoclastic in the beginning of november. I'm doing prednisolona since that time and I cant do other medication because I have Crohn disease (right now Im not doing any medication for crohn disease). I cant stand or walk for a long time because new marks appear (and can get worse, I had ulcers and still have some :( ). When I took antibiotic my vasculitis improved alot (the number of marks that appear decreased alot). Do I need more antibiotics? Does compression socks helps me? Can acupuncture help too? I want to go back to my life, to walk, to exercise, etc..

Sorry for my english, I did went to a dermatologist but cant find a good one..

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Carina03 profile image
Carina03
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18 Replies
lou1972 profile image
lou1972

What symptoms do you have? Is it in a certain area of your body?

Carina03 profile image
Carina03 in reply to lou1972

I have marks on my legs (including buttcheeks) I dont have joint pain or anything

DoubleD20 profile image
DoubleD20

I wouldnt wear compression socks unless told to do so by your doctor.

I was in the same situation as you in 2018, taking antibiotics then steroid treatment and azathioprine.

I had to take antibiotics for 10 days, I'm still taking steroids (went from 50mg down to 3mg in 2 years) and azathioprine from 50mg to 175mg. It can be a hard process, particularly to begin with when you cant walk or do anything.

Carina03 profile image
Carina03 in reply to DoubleD20

How can I do my life without this getting worse?

Mullany profile image
Mullany

I’ve also have this for three years I was given colchicine by my dermatologist worked wonders rash cleared less tierd less joint pain .

lou1972 profile image
lou1972

I have had Cutaneous Vasculitis since 2015 and Inhave had some bad episodes and currently have now. I have been prescribed Fexofenadene and does nothing to suppress the problem I think my body is use to my taking it now. I have had Prednisolone, Amitriptyline and Gabapentin. But nothing is helping. I have sores on my legs and much worse at night. I am losing sleep and feel very depressed. I had been in remission for 10 months and thought I had won but seems not.

Pokimoki profile image
Pokimoki

Hi Carina. Compressionsstockins defenently helps! You Need the long version. In Switzerland the „Krankenkasse“ pays one pair/year. Wear them every day!! Buy a good quality (at a good pharmacy). Why do you want antibiotics? Have you checked if you are allergic to some antibiotics? They can be the reason for cutane vaskulitis! And: dont shave and dont do epilation in your legs!! If your dermatologist is not good, try the dermatologie at an universitiy hospital. Change your dermatologist! Where do you life?

Whats your language? And sorry for My english to😀

Carina03 profile image
Carina03 in reply to Pokimoki

I live in Portugal. And I dont epilate/shave since the end of october (so yeh my legs are very hairy haha). I was just asking if I need more antibiotics because my vasculitis get better after doing antibiotics.

Pokimoki profile image
Pokimoki

I think its strange antibiotics for vasculitis! Also be carefull wird them because oder your stomach-Problems! The distroy all the Good bacterias too! Think about probiotics and may a Special diet is helpfull. I do it right now. And its good. In you interested. I can send you links.... do you hhave any foodallergies? What about gluteen? Lactose?

Carina03 profile image
Carina03 in reply to Pokimoki

I dont have food allergies. I have crohn disease which I need to be careful with my diet. I do need probiotics. Can you send me the links?

jackrussell profile image
jackrussell in reply to Pokimoki

I have Vasculitis,and always have Antibiotics when having a flare, certainly help in my case, was advised to have these by 3 different hospitals. ( just saying for interest only ).

Pokimoki profile image
Pokimoki in reply to jackrussell

Ok! Thank you!

Lovsterlover profile image
Lovsterlover in reply to jackrussell

Could u tell me which antibiotics they prescribed it mite help with my flare. Today I woke up with clear fluid dripping from a scab I knocked off. This has happened three times in the last ten days. Perhaps the antibiotics might help with this.

jackrussell profile image
jackrussell in reply to Lovsterlover

My antibiotics ,which I have at every flare is Amoxycillin, just a basic antibiotic, but for me it works, however if you do have them ,I would suggest you don’t have Augmentin which is Amoxycillin with Clavulanic Acid ,a sometimes prescribed way of having Amoxycillin ,as I was allergic to that.

These treatments don’t work for everyone , so good luck

Lovsterlover profile image
Lovsterlover in reply to jackrussell

Hi j r. Sorry I haven’t replied earlier. I am taking 10mg pred and 50mg azothiaprine daily plus rivaroxaban 10mg for a large clot I had six years ago. The ulcers I get are pretty shallow but I feel as if an elephant has trodden on my foot plus there’s the burning sensation. I have had seven cOVID jabs so far and am eligible for another one. But I wonder if this has anything to do with this extended flare I am experiencing. I did take pregabalin for the pain but I couldn’t function and had brain fog and I was walking round like a zombie So my rheumy prescribed 30mg codeine phosphate when the pain was hard to deal with. What dose of amoxicillin do you take and how long does it take for the vasculitis to improve. Thanks for replying with the aaddvice I haven’t got used to the site yet L L

Pokimoki profile image
Pokimoki

OMNi-BiOTiC® 10 (40x5g )

The orher Infos i send you tomorrow!

Pokimoki profile image
Pokimoki

m.youtube.com/watch?v=tIuj-...

Its all about cleaning your Body from sick Cells. May you can do it. die at least 4 weeks.

danerd1960 profile image
danerd1960

Wow! You have a lot going on. I have GPA and get ulcers too. I was diagnosed January 2017- got close to remission with Imuran, methotrexate & prednisone. I relapsed in April 2019 and am still dealing with healing ulcers. I tried Rituxan but it didn’t work. Tried cyclophosphamide but was too harsh for my body. Now I am on Cellcept, methotrexate & 75 mg of prednisone. I hope it works so I can taper down on prednisone! As for antibiotics I am on ceferime axytel but the only ones that seem to work are vancomycin & Levoquin. I hope you get to a better place!

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